THE SPIN COHORT
What is the SPIN Cohort?
The SPIN cohort is a group of people with scleroderma from around the world who participate in SPIN’s online studies. Cohort participants are recruited by rheumatologists and other scleroderma healthcare providers from over 45 clinical sites in 7 countries.
Through the cohort, SPIN collects information about important challenges to people with scleroderma and their support needs. Some cohort participants are also invited to test SPIN's online support programs for scleroderma before releasing them to the public.
How does it work?
People with scleroderma register for the cohort with a participating rheumatologist or scleroderma healthcare provider.
Every 3 months, cohort participants receive an email letting them know that it's time to complete an assessment.
Cohort participants log into SPIN's system on their computer, tablet, or smartphone, and answer questions about scleroderma-
related symptoms and problems.
This data helps medical experts understand the disease better, including which problems are most burdensome to people
with scleroderma.
SPIN uses this data to develop scleroderma- specific tools to help people manage and cope with the disease.
Some participants may be eligible and invited to try SPIN tools. Once tested, the tools are released to the public.
Can I join the cohort?
You may be eligible to enroll in the cohort if you:
1) Have been diagnosed with scleroderma 2) Are 18+ years old
3) Have regular access to the Internet 4) Speak English, French, and/or Spanish
Most cohort participants are enrolled by their rheumatologist or another scleroderma healthcare provider. If your rheumatologist or doctor is listed on our Sites Page, you can ask to be enrolled in the SPIN Cohort at your next appointment. If you do not see your rheumatologist or healthcare provider listed on the Sites Page, email spingeneral@gmail.com with the name of your rheumatologist or healthcare provider.